AnCan takes a holistic approach to your physical and mental health. AnCan also recognizes that a healthy mouth contributes to a stress free life… and all too often your condition, or the meds you take for it, can disrupt dental health. Some of our groups speak frequently about dry mouth (xerostomia), loss of taste (ageusia) and ONJ … osteonecrosis of the jaw.
When, Dr. Bob Gurmankin DMD, a recently retired dentist living with advanced prostate cancer, noticed the frequency with which these dental topics came up in his group, he suggested a two-step support program – 1) a handout on our website, and 2) a dental health webinar in 2024… watch out for this int he New Year.
One handout alone was not going serve all needs so Dr. Bob graciously prepared THREE to kick start our effort to help you maintain a healthy mouth.
Please download whatever is appropriate and spread the word to others who you think may benefit. Dr. Bob Gurmankin can be reached at dr.bob@ancan.org ; if you have questions he has kindly agreed to assist… THANK YOU DR. BOB!!!
Please participate in our Groups where you’ll find more support… onward & upwards.
This could be scary…It’s almost open enrollment season for Medicare!
A dreaded time to receive multiple communications in untold ways that often read like a foreign language. It’s only fitting that we talked about it the day before Halloween.
Join AnCan as we bring experts Amanda Goodstadt, Esq. from Triage Cancer, and Medicare Insurance Broker Kim Umphres to explain all things confusing around 2024 Medicare insurance options, and make this enrollment season a little less spooky and intimidating.
Our panel will explain the whole menu from alphabet soup plans to doughnut holes! Learn the difference between Traditional and Advantage plans and if you can switch between them, what HMOs and PPOs mean, how to sign up to see any doctor anywhere and much more.
Click here for a special handout from Triage Cancer with Medicare resources.
Special thanks to Bayer, Pfizer, Myovant Sciences, Foundation Medicine, Myriad Genetics, Janssen – Johnson & Johnson, Telix, and Blue Earth Diagnostics for sponsoring this webinar.
To SIGN UP for any of our Virtual Support groups, visit our Contact Us page.
So, you have MS. You may also be a Veteran of the United States military. What kinds of benefits and resources are available to those who have served and are now living with this debilitating disease? Here we hope you’ll find our beginner’s guide helpful in your search for benefits and resources.
Having MS and navigating the world of healthcare is dangerously daunting all on its own. Throw in some confusion about VA benefits, and you have a confusion cocktail to contend with (see what I did there?).
Before we dive in, just be warned: there is a plethora of information. Take your time researching, because there are a lot of links in this blog post. Because there’s so much info to take into consideration, we will do our best to update this blog as necessary. Check back regularly for more information as we come across it.
Over this past weekend, Jim struck up a conversation with an Air Force Veteran who has MS. He was surprised to learn that MS is, in fact, not covered under the Agent Orange Act or the PACT Act. MS has not been identified as an illness associated with the substances that these Acts target.
In his conversation, and subsequent research later on, he found that many people (perhaps as high as 60% of people) were denied upgrades to their disability rating. The VA, depending on evidence, will often award up to 30%. However, sometimes specific symptoms will allow for a higher percentage; one of those being chronic fatigue, which gets a 60% rating all on its own.
Jim also states that Veterans who are prevented from working as a result of their MS may be able to receive a benefit called “Total Disability on Individual Unemployment Ability”, or TDIU. This benefit compensates Veterans at the 100 percent rating, even if their overall disability rating may be less than that. Veteran’s symptoms must be Service-Connected (SC), and already have a 60% disability rating OR have “2 or more service-connected disabilities—with at least 1 rated at 40% or more disabling and a combined rating of 70% or more”. You also must not be able to hold down a steady job that would have supported you financially. Definitely click on he link above to read more about it and see if you qualify.
The website states: “The VA provides health care services to Veterans with MS from the time of diagnosis throughout their life, whether or not they have a service-connected or non-service connected status. If an individual had symptoms of MS in the military, or within seven years after honorable discharge, he/she may be eligible for service-connected disability.”
For those who are new to the benefits game:
The website suggests filling out the VA Compensation and/or the VA Pension form available online or at his/her local medical center for starters.
But oh my goodness, that’s a lot to sift through. Here are a few things on that web page that stand out to us:
Info on Filing and Intent to File – Sounds a little silly, but you may be able to receive retroactive payments for the time between when you submitted your intent to file and when they approve your claim.
Specially Adapted Housing Grant (SAH) for those who own their home, or will own their home, this is a grant that allows adaptive modifications to your home. Can receive up to $109,986 as of 2023
Special Home Adaptation Grant (SHA) is the same as the above, but with different qualifications. Can receive up to $22,036 as of 2023
Temporary Residence Adaptation for those who are living in a temporary family member’s home that needs changes in order to meet your adaptive needs. You must meet all the qualifying criteria for one of the two grants above. The amount changes depending on which one you qualify for.
Many people with a chronic or debilitating illnesses will tell you that advocating for yourself and your needs is of utmost importance. When dealing with and anything VA-related, persistence is key.
It’s tricky, and it’s a lot to deal with on top of managing symptoms.
Keep in touch with your primary care provider and your MS social worker. They’ll be able to help you refine your case for increasing your disability rating. They’re an invaluable source of information and help in signing up for various benefits. The provide supportive counseling to assist Veterans on the physical and emotional impact that MS can have on you and you family. They’re there to be your advocate, your negotiator, your case manager, and more.
If you don’t have a social worker on your team, look for the Social Work department at your local VA, or talk to your primary care provider or MS Specialist.
Here’s a summarized list of just some benefits offered at the VA. These programs require the help of a social worker:
Veteran Directed Care – offers monetary help with personal care services and daily living. Veterans are given a budget, and can even hire their own workers.
Medical Foster Home – This is a residency that’s similar to a nursing home, except Veterans are housed in a private home. Caregiving staff is on call 24/7. The VA ensures that these staff are well trained.
Captain James “Jim” Marshall wants you all to know that if you have any questions pertaining to benefits and navigating the system, feel free to send him an email:
Marshall-James@comcast.net
As we mentioned above, this article is just a small portion of info about benefits in the VA system. We will continue to update or even create new blogs as we see fit.
Above all we sincerely thank each of our Veterans for their service. We love and appreciate you!
Don’t forget to check out our MS Peer Support Group, which meets every 2nd and 4th Tuesday of the month
UPDATE #1 – Jim let me know that Amyotrophic Lateral Sclerosis (ALS) “is a presumptive condition for veterans with 90 days or more of continuously active service in the military. Any veteran with ALS should apply for Disability Compensation.”.
He goes on the state “Looking into justifying MS [and ALS] as Service-Connected, it is not as difficult as it seems. If the Vet was exposed to Hazardous Materials, most of us come across such things even in the states, then present VA thinking has MS service-connected because ‘IT IS AS LIKELY AS NOT’ caused by the exposure.”
Hi-Risk/Recurrent/Advanced PCa Video Chat, Sep 12, 2023
AnCan is grateful to the following sponsors for making this recording possible: Bayer, Foundation Medicine, Pfizer, Janssen, Myriad Genetics, Myovant, Telix & Blue Earth Diagnostics.
AnCan respectfully notes that it does not accept sponsored promotion. Any drugs, protocols or devices recommended in our discussions are based solely on anecdotal peer experience or clinical evidence.
AnCan cannot and does not provide medical advice. We encourage you to discuss anything you hear in our sessions with your own medical team.
AnCan’s Prostate Cancer Forum is back (https://ancan.org/forums). If you’d like to comment on anything you see in our Recordings or read in our Reminders, just sign up and go right ahead. You can also click on the Forum icon at the top right of the webpage.
All AnCan’s groups are free and drop-in … join us in person sometime! You can find out more about our 12 monthly prostate cancer meetings at https://ancan.org/prostate-cancer/ Sign up to receive a weekly Reminder/Newsletter for this Group or others at https://ancan.org/contact-us/
Editors pick: His growing prostate tumor causes pain, but he’s “too old” for treatment. (bn)
Topics Discussed
At the end of his treatment road, a spirited Carl Forman speaks to us from home hospice — “it’s almost like a spa”; prostatectomy at age 49, recurrence at 58, now on ADT and feeling “like a Mack truck hit me”; PSA stops creeping higher and stands still; high fever, swollen groin keep returning — is it his artificial sphincter?; radiology report suggests he’s developing MS — why’d medonc say nothing?; growing tumor causes prostate pain, but docs keep ruling out treatments; a month after ADT, testosterone is up tenfold; managing uncharacteristic low spirits after surgery; safe to walk the streets near Penn?; weighing a 20% fracture risk from spine radiation against the benefits; Myovant sold; mutations spring up out of nowhere in new somatic report; update on AnCan’s Great Nonprofits ranking; we’re no stranger to palliative care.
Chat Log
AnCan – rick · 6:12 PM
Forman – over 5 years… Sep 2018
Unknown · 6:17 PM
Carl Forman carl.forman@gmail.com
AnCan – rick · 6:35 PM
Gents – please be aware that AnCan has spoken often about end-of-life options and hospice.
AnCan – rick · 6:38 PM
We actually had an amazing session with Prof Bill GRHS that I think is accessible on our website. I will see it.
AnCan – rick · 6:56 PM
Prof Bill Burhans GRHS discusses hospice and end-of-life https://ancan.org/20064-2/ …..
AnCan – rick · 7:20 PM
cabazitaxel (Jevtana) vs docetaxel (Taxotere)
Alan Babcock · 7:21 PM
I have another meeting. See y’all next wek.
AnCan – rick · 7:24 PM
Suprapubic catheter is a tube above the prostate to the bladder that exits to a bag.
Len Sierra · 7:46 PM
Prostate-Specific Antigen Level at the Time of Salvage Therapy After Radical Prostatectomy for Prostate Cancer and the Risk of Death Derya Tilki , MD1,2,3; Ming-Hui Chen , PhD4; Jing Wu, PhD5; Hartwig Huland, MD1; Markus Graefen, MD1; Osama Mohamad , MD, PhD6; Janet E. Cowan , MA7; Felix Y. Feng , MD6; Peter R. Carroll, MD, MPH7; and Anthony V. D’Amico , MD, PhD8
AnCan – rick · 7:48 PM
Tx Len
Neil Sundstrom · 7:50 PM
someone is breathing heavily and it is hard to hear. Please mute
AnCan – rick · 7:50 PM
It’s John Kish who is speaking
AnCan and The Marsh (well renown, long-established theater company with a large following in the Bay Area and venues in San Francisco and Oakland) collaborateevery 4th Wednesday of the month for Solo Arts Heal!
You’ll love April’s guest, Tara Lazar!
Street magic performer. Hog-calling champion. Award-winning ice sculptor. These are all things Tara Lazar has never been.
Instead, she writes quirky, humorous picture books where anything is possible. Tara has been, however, a champion adult figure skater, but because of primary progressive multiple sclerosis (MS), she now walks with a walker and drives with hand controls.
She can still figuratively skate, as seen in her book, Little Red Gliding Hood; put on a pair of detective gumshoes, as she did in 7 Ate 9: The Untold Story; and trek into the world of “fun and entertaining vocabulary building” for older kids in her most recent book, Absurd Words, which won a Golden Kite award from the Society of Children’s Books and Illustrators.
She is known by other kid lit writers for her blog, Writing for Kids (While Raising Them), and for hosting her annual Storystorm challenge that attracts more than 2,000 writers to come up with thirty picture book ideas in thirty days.
Tara read from her award-winning kid literature, but let’s be honest, can be enjoyed by kids of all ages!
AnCan takes a holistic approach to your physical and mental health. AnCan also recognizes that a healthy mouth contributes to a stress free life… and all too often your condition, or the meds you take for it, can disrupt dental health. Some of our groups speak frequently about dry mouth (xerostomia), loss of taste (ageusia) and ONJ … osteonecrosis of the jaw.
